I'm sorry to have to keep mentioning this, but people are dying. To make it personal, consider that damage in 'MS'/CCSVI causes death. The problem with Enlightened Skepticism and being small-c conservative and not blithely jumping into the handiest bandwagon and all these reasons for inaction, is that cells, and from there bodily functions, and from there, whole people, are dying. Neurologists and Society execs sulk and complain about a lot of theoretical trash, obstruct, delay, and confound.
If anybody is really interested in saving the lives of these people, there is certainly enough evidence for a program of compassionate intervention. If we make this possible, in hospitals throughout Canada, with legitimate interventionalists and surgeons, performing a known, relatively simple procedure, costing the same as routine angioplasties that are done every day in this country, these people's lives can potentially be saved. Why just let them die?
Why not enroll all these compassionate interventions in a clinical trial and collect information on their progress? If we did at least this much, in hospitals across the country, we might even be able to learn something in the process.
Instead, a doctor threatening to save a life is threatened with loss of his license. The CIHR says there is not enough evidence. We have developed plenty of procedures, with no evidence,when people's lives are at stake. My brother had a shunt put in his head and neck, into his jugular, when he was only a day or two old, in a surgery that had not been done at all before. It saved his life, in 1964. Now he is a successful executive.
This CCSVI procedure is known to be safe and effective in most cases. If I were dying, I would sign any waiver or consent form I could, to have my life spared. Even if there were less than the evidence from Dr. Zamboni's first trial. Are we afraid these people might live, from placebo alone, and thus be illegitimately saved without scientific proof?
While we waffle and complain about evidence, why are we unwilling to go beyond peer-reviewed papers in a tiny subset of journals to assess evidence? To use the telephone? To visit a few places, and see what is being done?
It is a turf war, plain and simple, and a contest of wills where human lives are easily discarded, like so many pithed mice. The MS Society of Canada has chosen which side to be on in this turf war. People whose lives are at stake count for nothing. They are used to it. Doing nothing is easy.
So why would anyone who disagrees with this approach and wants to help these people want to support the MS Society?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience